Dystonia Society
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Hand dystonia

Hello I’m new on here and live in Ghana. I have been struggling with hand dystonia for about 10years now which makes writing very difficult and strenuous for me. Please is there anything I can do to improve on my writing skill and help with stability in performing this and related tasks?

Thank you

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I too have problems it's my right arm and hand . I find writing extremely difficult, very slow and squiggly. I find if I print instead of joined up writing it is a little easier and most of the time I can read it. With handwriting I can't read much of it at all. I am going onto some different medication when the hospital get round to writing to my doctor so I'll let you know what they are and how it goes. Have you been prescribed anything and what results did you get from the medication.

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Thanks so much for your reply Barbara. I was prescribed Baclofen by a Doctor I consulted with but that didn’t bring any improvement. He then proposed I take a shot of Botulinum toxin injection which i haven’t yet tried. I also do print sometimes but other times I am sort of compelled to write which makes it difficult.

Looking forward to reading again from you

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Hi sorry to take so long to reply. I have been offered two drugs but I was quite upset when I read how they react. The first clonazepam which makes you very drowsy and liable to keep falling asleep and also causes mental confusion. I wouldn't be able to drive and I look after my 19 month old granddaughter three days a week. I can't be falling asleep all the time and not knowing what I am doing. The second drug is the one you are on Baclofen which is very similar. Have you found problems with this as I am loathe to take these as well. I have also just received an appointment in a few weeks to find out about the Botox jabs for my hand/arm and possibly my throat.

I hope things are going ok for you and I look forward to hearing from you.

Barbara124

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Hello Barbara, hope you are good. I did have some side effects with taking Baclofen. It made me feel weak and nervous. My Doctor also talked about the Botulinum shot but added they are quite expensive. But I haven’t tried that either. May consider trying it too. Hope your appointment puts forth more options you can explore.

I pray you stay strong and you get the most improvement with whatever therapy you embark on.

Viban

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Hi Ivan

Rory i’ve Take so long to reply. I had four injections in My lower arm at half strength. It took roughly a week to kick in and I found it very difficult to do things as I am right handed. They suggested I start using my left hand more. I did start to get use to it but it has now started wearing off. I go back in the middle of August and I think I will give the stronger dose another try as the shaking definitely calmed down and I’ll also try to get hold of a a chunky pen.

Hope everything is ok with you

Take care

Barbar

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Hi Viban, although I don't have Dystonia in my hands I find it hard to write due to weakness in hands and wrists. I recently came across a chunky pen for people with arthritis and have found it much easier to use.

Hope this helps.

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Hello Dizzy, thanks for the tip. I’ll try that too and see how it works. Thank you

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I have cervical dystonia and it affects my hand and wrist as well, I will definitely try the chunky pen. Thanks for the tip, Why didn't I think of that?

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I am about to start taking an oil called cbd I think, it's a derivative of Hemp. It'supposed to help many different cases and types of Neuro disease . I have fibromyalgia as well as Cervical Dystonia, and can't use my left hand or arm at all. After one month I should see a result .watch this space. If cannabis is legal in Ghana try it!

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I can truly relate to you Susan i cant use my right side much either, i have tried cbd Hemp oil which is legal here in Florida, I found it helpful for pain and to relax, my daughter got a lower dose and "made me" try it. Whether its auto suggestive or not, it helped me with pain in my neck and she also rubbed my neck with some herbal roll on. I have not tried it yet on a dystonia attack but i plan on having some with me just in case.

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I haven't got around to trying the cbd oil yet I'm taking so much meds that I can't face it at the moment. As dystonia is a Neuro disease, I believe the oil will have some effect. My friends German shepherd dog was having up to 30 seizures a day and is down to 1or 2 a day thanks to cbd oil. I'm thrilled for her and the family dog.

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Hello Susan, thanks so much for the tip. Will be watching this space. Unfortunately Cannabis isn’t legal in Ghana. But nonetheless I hope to see you get major improvement.

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